"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘wheel chair’

Knee Update

Em had her MRI on Tuesday – we saw the doctor on Wednesday and got good news… the MRI showed that nothing is torn, so no surgery. He thinks the pop she heard was her patella being dislocated. So, while that explains the bruising, pain and instability, it is obviously long since back in place and now she just needs to heal up. On Wednesday when we saw the doctor, she was still in the wheelchair and in a lot of pain, although she had been able to bear weight on it intermittently over the weekend. Now she is bearing weight even without crutches and is just wearing a brace for stability.

We were going to do PT, but at this point she is rapidly improving so her dad will probably just work with her at home and that will be good enough. She goes back in 4 weeks for a follow-up but I expect her to be fine by then. I am very, very relieved that we dodged yet another bullet and that she doesn’t have to go through another surgery.

Co-op

I have mentioned numerous times that we are part of a homeschool co-op that meets on Fridays and I have a couple things I want to mention, things that fall in the category of how things just happen to work out in ways we don’t expect but end up just right…

This won’t surprise anyone but Em is at place where she would just prefer to pretend she is a normal girl most days. At co-op, she has done her level best to pull off that illusion for the first few weeks. With lots of new families who weren’t around when she was really sick, she can sort of pull it off…until, of course, she does her knee and has to have her knee in an immobilizer and use a wheelchair to get around. Inevitably that requires some explanation and I suppose it is good practice for the real world. My observation is that good things come when she is honest and open about her issues – I think she sees that as well, but it is still difficult for her.

The first neat thing that happened the week that she was in her wheelchair is that she made a friend. One of the families at Co-op recently adopted a little guy from India. He speaks enough English to get by but, no doubt, feels set apart as he is adjusting to his new life. Not because he is viewed as anything but a blessing but more so because he has some physical limitations.

I am not sure if his issues are congenital or from an accident, but the bottom line is that he is in a wheelchair, at least for now. So, when he saw Em wheel in, his eyes lit up and he went out of his way to talk to her. He was no longer the only kid in a wheelchair and that had to be special for him. It was special for Emily to know she had made him feel more at ease because she certainly still struggles with the feeling of being different. And he was impressed with the gloves she wears to prevent the wheels from tearing up her hands. 🙂

Sometime blessings come when you least expect them: Em felt so discouraged being in her chair again but she ended up making another child feel less alone. Funny how that works.

The second neat thing that happened is that Em was talking to one of the moms and discovered that this lady, Maria, has a sister with EDS.

That is an It’s a Small World moment on its own, but when we saw her the next week, Maria said she mentioned to her sister about Emily wanting to connect. The funny thing is, the sister asked if Emily’s mom has a blog because she recognized the details, having been following it. [Waves to Maria’s sister 🙂 ]

It is a small world and EDS isn’t nearly as rare as we have been led to believe, but I am still amazed when we run into this type of thing. We got a good laugh out of the fact that we already had a connection with Maria’s sister and just didn’t know it!

So, while Em being injured is never good, it is always interesting to see what good can come of a bad situation. When it is storming and clouds are all around, you may as well look for the silver lining!

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Whew, we have been a little busy the last couple weeks – doing science!

Our homeschool co-op decided to have a science fair this spring and Em was determined to participate. She came up with a great project and had some great plans. Unfortunately, like most teens, she underestimated how long it would take to complete the project, so we were rushing to finish it up at the last minute. Unfortunately, UNLIKE most teens, she really struggled with fatigue and pain, and leaving things to the last minute can mean that things may not get done – once the tank is empty, there is no quick and easy way to fill it back up.

By the end of the week, she was absolutely exhausted, headachy, and stressed, which always results in worsening GI symptoms (a bad combo for her). But, she kept pushing and was able to present her project on Saturday, as well as perform with her guitar class at our Open House. She is paying for it now, but it was a great experience that was worth it.

At some point this past week, amidst the rushing and requisite motherly chiding about time management, I realized that 2 short years ago, Em was essentially bed ridden and unable to function. There is no way she could have done the science fair or performed – as I recall, 2 years ago, she went to Open House for a little while in her wheelchair and headed home early. It was a miserable, scary time in which we were still desperately trying to cling to some sort of normalcy.

A year ago, she was better but was in a new round of headaches and was dealing with the side effects of the Diamox. We were struggling to get the dose right and get her CO2 levels in a good place. She was definitely better, but it was unnerving and frustrating to have the relapse. She went to Open House last year and it was a minor ordeal like everything was for her at the time.

So, this was quite an accomplishment and, time management issues aside, I was just thrilled that she is now able to participate more in her own life. It is sometimes hard to remember how far she has come.

Her science fair project also is a reminder of how far she has come. It was a classic with a very personal twist: Is Smiling Contagious…Even if you are in a wheelchair? Being in a wheelchair has been a blessing and a curse for her and she is understandably sensitive about it. She hasn’t been in her wheelchair at all for several months and hasn’t even really used the scooter we got in the fall and she has been pretty darn happy about that! For her to include the wheelchair in a project was not a casual decision – it was a decision born of a willingness to take a painful situation and learn from it.

Her hypothesis was that smiling would be contagious, but that people would smile more when she was walking and least when she was in her wheelchair. After a week of wandering around Walmart, trying to make eye contact with people (which would label them as a ‘subject’ and which sounds much, MUCH easier than it actually was) she finally had to admit that people actually smile and are friendly when she is in her wheelchair…IF she is smiling herself.

If she made eye contact and didn’t smile, people were less likely to smile, although they still smiled more than people did when she was walking and not smiling.

36% of subjects smiled when facing Em walking, making eye contact and NOT smiling

64% of subjects smiled when facing Em walking, making eye contact and smiling

44% of subjects smiled when facing Em in a wheelchair, making eye contact and NOT smiling

95% of subjects smiled when facing Em in a wheelchair, making eye contact and smiling

This may not be groundbreaking science worthy of a peer reviewed journal or even a highly competitive Jr. High science fair, but it was shocking for Em, who has long held the opinion that people treat you like crap when you are in a wheelchair. Perhaps they do treat you differently, but, they are more likely to be polite and smile when faced with a smiling face. In non-scientific terms, you get more flies with honey than with vinegar!

She did a great job, learned a lot and got a blue ribbon. It was a great experience and I am so thankful that she is well enough to have had a chance to join in – she has missed out on so much over the last few years.

Em’s project board

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So, I got word from the doctor’s office that Emily’s bone scan was normal. That good news was followed up with a cautionary statement that the doctor had not yet seen it when the nurse called; he had previously expressed concern that having it done at Reid would mean it would not be read properly and he would have to take steps to make sure it was. So, I am not willing to just accept ‘normal’ in this situation. We see him Friday and hopefully will be able to hash it out then. Also, in my skepticism, we will be getting a copy of the report so I can see it with my own eyes and have it for my records. Not that I don’t want ‘normal’ in this case. Normal would be a wonderful thing. Really. I just naturally doubt when any test my daughter has done is labeled ‘normal’. Also, I am aware that there can be a great deal of variation in results with the type of test Em had done, so the results could be less than clear.

Also, in equally unbelievable news -I just got a phone call from the wheelchair folks saying that Em’s scooter is in and we should be getting it tomorrow. Forgive me for my continuing skepticism, but I will believe it when it is in my vehicle and we are driving away. I should be more trusting but I just am not. Honestly, I had given up on it because I hadn’t heard anything about it and had even received a puzzling rejection letter informing Jody, Dr. Neilson’s genetic counselor at Cincinnati Children’s, that her request for a manual wheelchair for Em was rejected. That was beyond odd since no one at Cincinnati Children’s had requested anything for Em and they were not even involved beyond writing a letter stating that a wheelchair is often necessary for EDS patients. Furthermore, we already have a manual chair and, through Reid Physical Therapy, we were requesting a scooter. I have no idea what the point of that rejection letter was, but, apparently, it had nothing to do with anything. So, good. I think.

Anyway, in 24ish hours, Em may be the proud owner of her own set of wheels. Pictures will follow if this is not all a great cosmic joke.

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At the moment, we are more or less in limbo, trying to make progress but only able to take baby steps towards the goal. It is a little like swimming in molasses – you just don’t get very far!

On the vitamin D issue – still trying to decide which way to go. We need a new pediatrician, who can be our partner in dealing with all of the crap Em is dealing with but it is a matter of deciding where to go. I am leaning towards leaving the practice and finding a new group altogether, but we have to find out who is covered by insurance. We need to move on this issue but I have to find someone who takes Em’s bone health as seriously as I do and that may not be an easy thing to accomplish.

Still waiting on the scooter. It will be four weeks since we talked to the rep and made the decision to go with the scooter. I have no idea how long it should take to hear from insurance, but I am getting impatient – surely a decision will be made soon. A scooter would make a big difference for Em and we are getting tired of waiting. I will contact the rep if I haven’t heard from her this week to see where we are.

We have two upcoming doctor appointments that are on my mind:

October 26 we see Dr. Abonia, allergist/immunologist and mast cell expert at Cincinnati Children’s. We have waited a long time to get to someone who knows about MCAS and, from all I hear of Dr. Abonia, he will be the one. I am cautiously optimistic – I think he will be able to help us, but I am not counting my chickens yet! We have had too many rotten experiences to go into this one blithely. And yet, I am hopeful that real mast cell treatment will be offered. We shall see.

On November 6, we go to the motility clinic at Cincy. I am barely cautiously optimistic about this, to be honest. I know we need to a GI specialist and, since poor motility is the issue, seeing a motility specialist makes sense. Ideally, we will find a sympathetic ear and help maintaining her weight and general health. I would like a referral to a nutritionist – I could use some help making sure Em’s diet is as complete as possible, within the parameters of all of her food sensitivities and restrictions.

BUT… I am not looking forward to the testing they will need to do, I worry they will not take her problems seriously because she is maintaining (at the moment) and I KNOW they are going to want her off of most of her meds, since many of them can contribute to the problem. We have already started switching her to Tramadol in place of Norco, not sure it is going to help with the GI issues, but that is one easy switch we can make. I am fine with considering reducing (but not eliminating) some of the others – maybe the amitriptyline could be carefully reduced. I am pretty worried about this. Taking away her pain relief is just NOT an option.

I am also worried that they will push for Em to go gluten free. I don’t think gluten is a problem for Em and I am really concerned about removing another group of foods from her diet without evidence it will help and not hurt. Many, many of my friends have gone gluten free and I know it is the current thing but also I know it is not something to do without very good reason. So, I will not do it on my own and I will be very, very hesitant to go along with this recommendation.

I guess I am worried that 1) they will not take us seriously, blowing us off and then where will we be? and 2) they will take it too seriously, ordering invasive, unpleasant testing and throw unnecessary, unhelpful solutions at us. So, pretty much my usual new doctor worries but the stakes are pretty high on this one. We will hope for the best, being prepared for the pitfalls that we may find. It would be lovely if this appointment was awesome, but I will just hope for ‘ok’ and be happy with that, if it happens.

It seems like so much of what we do is wait and that is terribly frustrating. And yet, we are in the process of making progress – one little step at a time. That is something I should be thankful for and I need to remind myself of once in a while!

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Haven’t had anything new to post recently, but I will take a few minutes to give some quick updates:

Nothing new to report on the vitamin D front. Still trying to figure out how to get to someone who can/will help us. I need to call the pain doc and let him know that I am not happy with the treatment Em is getting for the vit D deficiency. Maybe he will go along and treat it himself. Or, better yet, agree that Em needs to see an endocrinologist. I am just sick of the whole thing, to be honest. It should not be this hard to treat this deficiency properly. Obviously, we have seen no improvements of her symptoms on the 2,000 iu of vitamin D that she is on.

I need to find out which pediatricians are available to switch to – because we are not going back to the old one. I am concerned that we are going to be stuck staying in the same practice, in which case, I don’t feel like I can burn bridges by expressing my opinion to the doctor we have fired. After seeing a number of doctors in this practice over the years, I can’t say that I would be sad to leave – I just don’t know if there are any other pediatricians our insurance covers. There has been one that we liked when we saw her one time that we couldn’t get in to see our own doctor – but I am not holding my breath that she will be awesome. Better than what we had might be as good as it gets.

One other course of action that we are going to follow up on is the idea of a physiatrist – also known as a physical medicine doctor or a rehabilitation doctor. A thread on Inspire reminded me of this option and I think it is definitely worth looking into. Andrew says there is a new one at Reid and we need to find out if he would even take Emily as a patient. Then, of course, it would be a matter of discovering if he could be a positive addition to our medical team. At least it is another hopeful possibility until we know differently.

We are still waiting to hear whether insurance will approve the scooter that has been ordered for Em. It will be 3 weeks Thursday that we met with the wheelchair rep and decided to order the scooter – hopefully we will hear something soon. I am hoping that it is approved soon and that it is in her possession for Halloween. She is planning on going trick or treating with homeschooling friends and I would LOVE it if she had the scooter to ride instead of being pushed in her chair. Time is running out though, so again, just waiting to hear something.

Also still waiting to have the GI appointment scheduled and I am not happy about that. I have now tried to schedule it 3 times – the first time, they scheduled it wrong and that mistake was discovered only because I called about another appointment. I was transferred to the only person who could make the appointment – she never returned my call. I called again and still have not heard from her. My next step is to throw this back to Dr. Neilson and let them push it through.

So, in summary:

On our own to find answers. AGAIN.

Waiting, waiting, waiting.

Not a happy camper about any of it.

Pretty much the usual, in other words.

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We met with Lynn (the wheel chair rep) yesterday afternoon and we are getting closer and closer to making a decision on what exactly we are going to get. (If insurance agrees, which is becoming my big worry at the moment. But, there is nothing to do about it today, so we will cross that bridge when we get to it.)

I am hoping that I can convince Em to write a post ‘reviewing’ each of the options she tried yesterday but, until that happens, I will share a bit.

The rep, as planned, brought a manual chair with E motion wheels, a nice power chair and a scooter. Em didn’t want her to bring the scooter because it wasn’t even an option as far as she was concerned.

Guess what Em loved… Yup, she loved the scooter. So, yeah, bless Lynn for including it in our options because it just may be the answer.

The E motion wheels would be great if you had no upper body issues – but we all know EDSers have all over problems. So, Em definitely could propel herself easier, but still fatigued pretty quickly and the wheels were very touchy. It would definitely take time to get used to them. The wheel chair itself was pretty comfortable, but the back was too low to support her back and shoulders sufficiently. She ruled it out almost immediately.

The power chair, well, it was nice for what it is – which is a big, ol’ power chair. The most positive thing about it was the back would give her excellent support and it turns on a dime. It is big, though and wouldn’t be very practical in the house. She could probably use it, but I am not sure it would fit in her room and I know she would not be able to turn around in the hallway with it. She tried it in the wet grass and got totally stuck – so it isn’t exactly an all terrain vehicle. And it is really a lot of chair for someone who doesn’t need it all the time.

But. The scooter. She loved it and immediately saw that it could be the answer for her. There are some negatives and it will only be an option if we can make some adjustments. The biggest problem is the back – again, it is too low to properly support her back. Unfortunately, it is not an easy fix as no one apparently makes a higher back for the size of scooter she is looking at. So, it may be a matter of customizing a back for her. If that can’t be done, it is a deal breaker. The other issue is the controls require that her arms and fingers to be under constant strain. By adjusting the arm rests and angle of the controls, she can rest her arms. But it will be an issue.

Of course, with the power chair, she has a similar issue – less strain overall, but if her right shoulder/arm/elbow/wrist/fingers are injured, she would not be able to use the chair. But, we still have the manual chair – in that situation, she would simply need to be pushed. So, there is no perfect answer: we just have to find the best answer and we are fortunate to have options.

And, Em was pretty brilliant in the way she went about her decision. As I said, she was immediately drawn to the scooter, but after being sure that it was the right choice, she back tracked and reconsidered the power chair, suddenly trying to envision her worst day and what she would need. So, the power chair is still on the table, if the scooter cannot be tweaked to work for her.

In the discussion about what her worst day looks like, we talked about this upcoming week that will be rough. 3 doctor visits and likely another funeral (my grandfather is being taken off of life support this evening, after collapsing the evening of my grandmother’s funeral last week), plus Co-op. Lynn said, just take the scooter and try it out this week. If it works for this difficult week, it should do the trick most of the time. So, we have a scooter to try out until next Thursday and, so far, it is great. Em has scooted down to her grandparents house a couple times already and has said she could easily go by herself. (That is called independence, folks.) We will try it in the house and see how it does. We will go shopping and see how it does. She can try it at Co-op on Friday and at her doctor appointments, hopefully that will make her life a little easier this week.

It is pretty exciting and I think it will give her so much freedom and independence. She is thrilled and so am I. I mean, our ultimate goal is for her to not need it at all, but until that day comes, it will be awesome to see her in charge of her own mobility.

We will see what happens, but I think we are on the right track and it is a huge blessing to be able to trial the scooter and be able to make a very educated decision in the end. Now we start praying that insurance cooperates and lets Em actually have a scooter now that she has made up her mind!

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11 years old, and EDS had struck. I lost my life. Now the meaning of “Hey mom, I’m going to the park with the neighbor kids” doesn’t mean anything. The things that gave me a rush before are pointless. Now going to physical therapy is as normal as going on a picnic. Going to the doctor’s office is as normal as going to the mall. Taking meds is as normal as asking mom for a piece of gum. Putting braces on is as normal as changing clothes 4 times a day for a little girl. Putting a dislocation in is as normal as putting on a bandaid. Putting a hard collar on is as normal as putting your hair up in pigtails. Sitting in a wheelchair is as normal as riding a bike.

And yet I get up everyday. I deal with the same issues everyday. I put a smile on my face. I stay strong. I deal with the pain. Every 5 minutes I have to stop what I’m doing to put a joint back in place. No matter what I do I am still in pain. I can’t walk for long, but I can’t sit in a wheelchair for long. I take medicine 4 times a day. Every single day. Whenever I do something to relieve a problem, I get 15 more. Whenever I put a joint back in place, my skin splits. Giving me 1 more problem to deal with.

You can see that EDS is a real thing. 1 in 5,000 people have it. And yet doctors say we’re faking it. That we have gone mental. That we don’t have pain. We want attention. That we are blatantly lying to their faces. Well, Doc, where’s the proof? We have presented our physical proof to your, where’s yours? We get treated like crap by doctors, and yet we have no choice but to go back to them. They tether us to them using medicine that we have to get renewed every 3 months.

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Welcome!

Thanks for visiting my blog where I chronicle 'Our Life with Ehlers Danlos Syndrome'. I am sharing my family's journey with EDS (and everything that goes along with it) in the hope that our experiences will help someone else.

Go to Our Story to read about the early days of our EDS journey. Or click here to go to the first post of this blog, if you would like to start at the beginning.

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